A Good Night's Sleep? Not with ME/CFS

Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time.

It doesn't really work that way.

Some of us can't sleep at all. Others sleep for long periods but never when they'd like to. Many of us lie helplessly awake all night longing for respite, only able to succumb to sleep as the dawn begins to break.

My own experience for a number of years was a reversal of the usual sleep-wake cycle. I rarely saw my family since I slept most of the daytime hours, only feeling a semblance of wakefulness after sunset. Long after my family had gone to bed, I was up and staring at walls, or online fumbling for information on whatever was wrong with me.

Some of us don't actually sleep as most people know it, but rather move back and forth in a zombie-like state of limbo between shallow catnaps and heavy-lidded and uncomprehending consciousness. We could be called "awake" but we have no energy to move, and cognitive ability is sketchy and ephemeral.

My son used to be stuck in wakefulness for 24 hours, then would sleep for the next 10 hours. When he'd come to, he looked like the walking dead. No, not walking. Draped over and molded to his bed.

Michael J. Breus, Ph.D., clinical psychologist, Diplomate of the American Board of Sleep Medicine, and Fellow of The American Academy of Sleep Medicine, described the sleep dysfunction of ME/CFS as involving a variety of abnormalities. ME/CFS can involve excessive sleepiness during the day, having sleep that is not refreshing or restorative, or insomnia. Other aberrations are obstructive sleep apnea, narcolepsy, and trouble staying asleep.

Breus went on to say that the connection between ME/CFS and sleep is poorly understood by the medical and research community. He cited research from the Victoria University in Australia which studied this sleep problem over the last twenty years.

More than 50 percent of people with ME/CFS experience sleep dysfunction. More than half also were seen to have sleep-related movement disorders like restless leg syndrome, or obstructive sleep apnea. People with ME/CFS have more problems with sleep than people with multiple sclerosis. Another study also indicated that almost half of people with ME/CFS had obstructive sleep apnea.

Research also indicated that almost 80 percent of those with ME/CFS had sleep that was unrefreshing, and 20 percent had narcolepsy or obstructive sleep apnea.

It is possible that pain may be a factor that contributes to sleep problems. Pain can make it hard to sleep. And lack of sleep can increase our experience of pain. This sets up a debilitating cycle that can be hard to resolve.

Other research showed that sleep is disrupted more often in people with ME/CFS than in people that are healthy or depressed.

Healthy people whose slow wave sleep was disrupted by fatigue and pain were affected in a similar way to people with ME/CFS. Some research has posited that those with ME/CFS get less slow wave sleep than their healthy counterparts. Since people with ME/CFS have been seen to spend less time in slow wave sleep and possible REM sleep than normal, it may be that they are just not getting restorative sleep.

The research has not yet led to definitive conclusions, and correlations in this matter are not clear.

There does seem to be a correlation between disrupted sleep and systemic inflammation. Systemic inflammation is commonly seen in people with ME/CFS. More research into this possible connection is needed.

Research involving the nervous system may lead to some answers, as it seems that there may be involvement of the nervous system with disrupted sleep. The nervous systems of people with ME/CFS often show alterations while awake and possibly while sleeping, which might impact their quality of sleep.

While little information is actually known in this area, it seems clear to researchers that disrupted sleep is a big factor in ME/CFS. Continued research targetting this area may lead to some answers.

That we are clobbered in many ways by sleep dysfunction is not news to those of us with ME/CFS. The fact that research has not found clear and useful answers is discouraging and frustrating for us as we continue to wait ... and wait. But the fact that researchers are looking for solutions for us and have been examining a few new pathways may be taken as cause for optimism for answers in the future.

There may be a frustrating situation where our bodies actually don't have enough energy or the right kind of energy to sleep properly. We may be so depleted of energy and basic system functions can be so out of whack that we can't sleep. Which is a vicious cycle. I would be curious to see if there is a correlation between severity of CFS and severity of sleep problems.

There is also evidence of our systems being on alert. The nervous system, the immune system. There is evidence of hyperventilation in CFS patients. It could be impossible for us to sleep or sleep well because our body is in a kind of sustained fight or flight response.

I found that consistently getting 10+ hours of sleep a night (along with eating healthy, limiting activities and sources of stress during the day, and taking supplements) made a huge difference in my recovery. Unfortunately, I gained 30 lbs and had high cholesterol from my sleep medication so I had to stop. I'm also taking SSRIs now for depression which also interferes with my sleep.

There may be a frustrating situation where our bodies actually don't have enough energy or the right kind of energy to sleep properly. We may be so depleted of energy and basic system functions can be so out of whack that we can't sleep. Which is a vicious cycle. I would be curious to see if there is a correlation between severity of CFS and severity of sleep problems.

There is also evidence of our systems being on alert. The nervous system, the immune system. There is evidence of hyperventilation in CFS patients. It could be impossible for us to sleep or sleep well because our body is in a kind of sustained fight or flight response.

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There's a study which examines a link between ATP and sleep
http://www.sciencedaily.com/releases/2010/09/100914100302.htm#
The researchers documented how ATP (adenosine triphosphate), the fundamental energy currency of cells, is released by active brain cells to start the molecular events leading to sleep. The ATP then binds to a receptor responsible for cell processing and the release of cytokines, small signaling proteins involved in sleep regulation.
By charting the link between ATP and the sleep regulatory substances, the researchers have found the way in which the brain keeps track of activity and ultimately switches from a wakeful to sleeping state. For example, learning and memory depend on changing the connections between brain cells. The study shows that ATP is the signal behind those changes.

Getting good sleep is huge. I have found several problems with my sleep, all related to poor methylation:

a) periodic limb movement disorder aka restless legs or feet twitching all night long and waking you up causing unrefreshing sleep. This is due to lack of magnesium, which is depleted at a massive rate due to poor methylation. I'm currently taking a large amount of magnesium glycinate to compensate. I should be able to decrease this supplement as I work on methylation and my magnesium regulation improves.

b) delayed sleep phase syndrome - you're awake late at night and sleep during the day. Mine was so bad that it kept moving later and later every day, until it moved all the way around the clock every month. This went on for years. I solved this by taking control of the light. In nature, morning light is blue which stimulates serotonin and wakes you up. In the evening, the light is amber, stimulating melatonin which makes you sleepy. When you use the tv, and especially the computer at night, they emit blue light, which wakes you up at the wrong time. The answer is to block all the blue night at night by either avoiding the computer/tv or wearing blu-blocker (amber colored) glasses or using software that turns your screen orange and black. You can also get out in the morning light or use a blue SAD light such as an Apollo Golite in the morning to reinforce the cycle.

This affects many people, but I believe we're especially susceptible to this due to poor methylation, which affects the levels of serotonin and melatonin we're able to produce.

c) catathrenia or breath holding while sleeping - some people make a groaning noise when sleeping. This rare and mysterious condition has no known cause or treatment (sound familiar?) The noise is due to holding your breath, then when you start to breath again, the noise is made. There can also be breath holding without the noise. This is more like what I have. I wake up many times a night with my heart pounding and racing. Sometimes I catch myself gasping for air. This is especially noticeable early in the morning during REM. I have been able to somewhat alleviate the problem by increasing B12, but I haven't been able to get the B12 up to a very high level yet. In addition the two catathrenia people who have gotten relief have done it through B12 supplementation or cleaning up their diet.

My hypothesis is that lack of glutathione in the brain stem (which controls breathing) is what causes this problem. Glutathione can be raised by treating poor methylation.

d) Excitotoxicity - again this is a methylation issue. Exitotoxicity is due to GABA/glutamate imbalance. GABA is calming, glutamate is stimulating. You might get some relief with GABA supplementation. I take it throughout the day. Fixing methylation should restore the balance.

e) High cortisol at night - the disordered cortisol is due to HPA axis disregulation, which causes apparent adrenal fatigue. In severe cases, (like mine), the cortisol pattern is extremely low at all times, but slightly higher at night. I call this apparent adrenal fatigue because I believe is actually a hypothalmus/pituitary signalling problem due to lack of glutathione in those organs. The adrenals themselves are not fatigued and would probably work quite well if only they got the proper signals. Messing with cortisol levels via hormones or Seriphos may or may not be helpful or may even cause adverse effects. Again, poor methylation is the cause, and treating methylation should fix this problem.

I don't think pain has anything to do with sleep dysfunction though. I experience almost no pain (otherwise I fit ICC) but have completely messed up sleep cycle: awake during the night and sleeping during the day, or sleeping 20 hours a day, or staying awake for a whole day and then collapsing, some jolts and shocks waking me up etc.

Getting good sleep is huge. I have found several problems with my sleep, all related to poor methylation:

a) periodic limb movement disorder aka restless legs or feet twitching all night long and waking you up causing unrefreshing sleep. This is due to lack of magnesium, which is depleted at a massive rate due to poor methylation. I'm currently taking a large amount of magnesium glycinate to compensate. I should be able to decrease this supplement as I work on methylation and my magnesium regulation improves.

b) delayed sleep phase syndrome - you're awake late at night and sleep during the day. Mine was so bad that it kept moving later and later every day, until it moved all the way around the clock every month. This went on for years. I solved this by taking control of the light. In nature, morning light is blue which stimulates serotonin and wakes you up. In the evening, the light is amber, stimulating melatonin which makes you sleepy. When you use the tv, and especially the computer at night, they emit blue light, which wakes you up at the wrong time. The answer is to block all the blue night at night by either avoiding the computer/tv or wearing blu-blocker (amber colored) glasses or using software that turns your screen orange and black. You can also get out in the morning light or use a blue SAD light such as an Apollo Golite in the morning to reinforce the cycle.

This affects many people, but I believe we're especially susceptible to this due to poor methylation, which affects the levels of serotonin and melatonin we're able to produce.

c) catathrenia or breath holding while sleeping - some people make a groaning noise when sleeping. This rare and mysterious condition has no known cause or treatment (sound familiar?) The noise is due to holding your breath, then when you start to breath again, the noise is made. There can also be breath holding without the noise. This is more like what I have. I wake up many times a night with my heart pounding and racing. Sometimes I catch myself gasping for air. This is especially noticeable early in the morning during REM. I have been able to somewhat alleviate the problem by increasing B12, but I haven't been able to get the B12 up to a very high level yet. In addition the two catathrenia people who have gotten relief have done it through B12 supplementation or cleaning up their diet.

My hypothesis is that lack of glutathione in the brain stem (which controls breathing) is what causes this problem. Glutathione can be raised by treating poor methylation.

d) Excitotoxicity - again this is a methylation issue. Exitotoxicity is due to GABA/glutamate imbalance. GABA is calming, glutamate is stimulating. You might get some relief with GABA supplementation. I take it throughout the day. Fixing methylation should restore the balance.

e) High cortisol at night - the disordered cortisol is due to HPA axis disregulation, which causes apparent adrenal fatigue. In severe cases, (like mine), the cortisol pattern is extremely low at all times, but slightly higher at night. I call this apparent adrenal fatigue because I believe is actually a hypothalmus/pituitary signalling problem due to lack of glutathione in those organs. The adrenals themselves are not fatigued and would probably work quite well if only they got the proper signals. Messing with cortisol levels via hormones or Seriphos may or may not be helpful or may even cause adverse effects. Again, poor methylation is the cause, and treating methylation should fix this problem.

Rich Van Konynenburg discussed many of these things in his writings.

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At least in the beginning, methylation can cause decreased glutathione, sleeplessness, and excitoxicity so someone should be aware of that when starting a methylation protocol.

Part of neuro-immune illness is an inverted sleep schedule. Most of the MS folks have the same complaint. I had the same experience as Mark. Growing up with a dad who was in marine corps, and was definitely a morning person, made my sleep schedule a freakin nightmare. In fact, I'm what's known as an "edge sleeper". I start feeling most sleep when night is turning to day, or day is sort of late afternoon.

I don't think pain has anything to do with sleep dysfunction though. I experience almost no pain (otherwise I fit ICC) but have completely messed up sleep cycle: awake during the night and sleeping during the day, or sleeping 20 hours a day, or staying awake for a whole day and then collapsing, some jolts and shocks waking me up etc.

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Thanks Tally.

I agree that pain doesn't necessarily play a part in everyone's sleep dysfunction. My son who also has ME/CFS does not have alot of pain but his sleep has been messed up for 6 going on 7 yrs now. I on the other hand deal with alot of pain, but in recent years my sleep is pretty much in the normal range.

For some though, chronic pain can be just one more thing to block the ability to sleep, and there can be a never-ending cycle of pain contributing to lack of sleep which contributes to experience of pain, and round and round.

i normally fall asleep but than awake few hours after and fell dizzy and like someone hit me with a baseball bat in the back of my head. than i have to awake so this felling stop. after that im trying to fall asleep again but even if i manage the quality of that sleep is so bad that sometimes i wish i didnt even try. when my sleep is in balance im 60% recovered but if not im on 20-25% of normal.

Getting good sleep is huge. I have found several problems with my sleep, all related to poor methylation:

a) periodic limb movement disorder aka restless legs or feet twitching all night long and waking you up causing unrefreshing sleep. This is due to lack of magnesium, which is depleted at a massive rate due to poor methylation. I'm currently taking a large amount of magnesium glycinate to compensate. I should be able to decrease this supplement as I work on methylation and my magnesium regulation improves.

b) delayed sleep phase syndrome - you're awake late at night and sleep during the day. Mine was so bad that it kept moving later and later every day, until it moved all the way around the clock every month. This went on for years. I solved this by taking control of the light. In nature, morning light is blue which stimulates serotonin and wakes you up. In the evening, the light is amber, stimulating melatonin which makes you sleepy. When you use the tv, and especially the computer at night, they emit blue light, which wakes you up at the wrong time. The answer is to block all the blue night at night by either avoiding the computer/tv or wearing blu-blocker (amber colored) glasses or using software that turns your screen orange and black. You can also get out in the morning light or use a blue SAD light such as an Apollo Golite in the morning to reinforce the cycle.

This affects many people, but I believe we're especially susceptible to this due to poor methylation, which affects the levels of serotonin and melatonin we're able to produce.

c) catathrenia or breath holding while sleeping - some people make a groaning noise when sleeping. This rare and mysterious condition has no known cause or treatment (sound familiar?) The noise is due to holding your breath, then when you start to breath again, the noise is made. There can also be breath holding without the noise. This is more like what I have. I wake up many times a night with my heart pounding and racing. Sometimes I catch myself gasping for air. This is especially noticeable early in the morning during REM. I have been able to somewhat alleviate the problem by increasing B12, but I haven't been able to get the B12 up to a very high level yet. In addition the two catathrenia people who have gotten relief have done it through B12 supplementation or cleaning up their diet.

My hypothesis is that lack of glutathione in the brain stem (which controls breathing) is what causes this problem. Glutathione can be raised by treating poor methylation.

d) Excitotoxicity - again this is a methylation issue. Exitotoxicity is due to GABA/glutamate imbalance. GABA is calming, glutamate is stimulating. You might get some relief with GABA supplementation. I take it throughout the day. Fixing methylation should restore the balance.

e) High cortisol at night - the disordered cortisol is due to HPA axis disregulation, which causes apparent adrenal fatigue. In severe cases, (like mine), the cortisol pattern is extremely low at all times, but slightly higher at night. I call this apparent adrenal fatigue because I believe is actually a hypothalmus/pituitary signalling problem due to lack of glutathione in those organs. The adrenals themselves are not fatigued and would probably work quite well if only they got the proper signals. Messing with cortisol levels via hormones or Seriphos may or may not be helpful or may even cause adverse effects. Again, poor methylation is the cause, and treating methylation should fix this problem.

Rich Van Konynenburg discussed many of these things in his writings.

Click to expand...

High night time cortisol isnt like cushings disease but just slightly too high to not allow us to sleep properly and during the day its just too low but not like in addisons disease just not high enough to allow us to function normally. Instead of having high morning to low night time curve of cortisol we are just a flat line.

Adrenal fatigue like u mention is not really whats going on but its a common term that sort of gets the message across. Your right in that i also think its the HPA axis malfunctioning. I think i posted an article on it in the past where it mentions the actually abnormality is in the hypothalamus in a part called the PVN- para ventricular nucleus which controls adrenal hormone function by sending messages to the adrenal glands. Im guessing its the PVN that is damaged during cfs/me and this damage either lowers total cortisol production or distrupts the cortisol rhthym. I think this cortisol rhthym has more to do with our sleep then circadian rhthym.

I also wonder if low dose hydrocortisone treatment helps those with disrupted cortisol rhthyms by helping reset this clock and these are the people who can come off this type of treatment after a certain length of time. Those that have a total low cortisol all the time maybe the ones who need to be on HC therapy for life. Then there is a number of people who just cant handle any of these types of adrenal treatments. I dont really understand this yet but think that maybe those with very high reverse T3 levels would be at risk of side effects from adrenal treatments initially.

There are alot of other interwoven cycles and functions as well playing their parts like already mentioned gaba etc but also NMDA receptors, serotonin/melatonin. Personally i think thats why it takes a variety of treatments to effectively treat our sleep as we have to attack it from all these angles that are broken or maybe its just a matter of resetting or rebooting or sleep machinery. For some of us i think its just broken

Getting good sleep is huge. I have found several problems with my sleep, all related to poor methylation:

Click to expand...

Ive recently found out the same, the poor methylation was giving me sleep issues. Being on supplements to improve that has me now usually waking up at a decent time of the morning and not being all dazed and half asleep in the mornings (I hadnt been waking up this early and able to get up easily at this time for years and years).

I hope others who have issues with sleep consider that working on methylation may improve it.